We wanted to provide a background overview from when Félip was born leading up to our current daily lives. This should help put our regular blog posts into perspective. Our detailed story including all the events that transpired in the beginning is much too long for a sit down read on the website. We might consider writing it in a different form someday.

The following text is equivalent to about 8 pages in your favorite novel. So, sit back, relax and happy reading!

Early challenges

Félip was born at 39 weeks weighing in at a healthy 8lbs 5ozs after a very eventful birth experience, to say the least, with Robyn getting HELLP syndrome on the day before Félip’s birth. Thankfully Robyn recovered well and we left the hospital for home just 2 days after the delivery.

There were a few odd things about Félip’s behavior and physical anatomy early on. The most noticeable things were his low muscle tone and his sleepiness. One of our midwives stated that there was definitely something wrong with Félip almost from day one. We started seeing a community pediatrician when he was about a month old to address these concerns that also included breastfeeding troubles. We started doing some basic tests to try and pinpoint a possible cause.

At his two month follow up with the pediatrician we still hadn’t found a cause but we were all encouraged by Félip’s undeniable and obvious progress. His muscle tone was improving and he was more alert. He still wasn’t at the level of other children his age but his improvement was a terrific relief. Our pediatrician explained to us that some children are born with low muscle tone and eventually outgrow it to a point where it’s completely unnoticeable. We came out of that appointment feeling ecstatic. Our next follow up appointment was going to be after the holidays as it was now the end of November and we were set to travel to Grand Falls to visit both our families.

A trip we would never forget

We planned a 17 day trip to Grand Falls, taking Félip and our smallest dog, Noah. Flying with a baby proved to be very interesting and exhausting. Between changing his poopy bum a few times in the plane’s tiny washroom and taking turns holding him through the almost 10 hour ordeal there was little room for rest.

The first 5 days in New-Brunswick we visited both our families. Everyone was enjoying meeting Félip. We were planning get-togethers on both sides to congregate all the extended family that wanted to see us. Félip was content just being cuddled and being fed his bottle by anyone willing. He would rarely cry and usually just fuss when he was hungry. He was very quiet and calm. Everyone would say ”Wow! You guys are lucky!” and ”He’s such an easy baby!” .

Christmas surprise

On the fifth day we noticed Félip was having weird episodes. Robyn’s mother noticed it first and described it to us and we soon got to witness it for ourselves. He would become unresponsive for about 45 seconds, just staring out blankly and becoming limp. Then, after the moment had passed, he would be back to his regular self but his eyes were watery and his face was a little flushed. After some quick research we realized that it really resembled absence seizures.

We quickly rushed to the local general hospital and were transported by ambulance to a bigger institute with a pediatric ward in Edmundston , about 50 minutes away. There they confirmed he was having seizures. He was admitted to the ICU to be constantly monitored by a nurse and we started anti-seizure medication trials. Both of us started taking shifts day and night watching over him alongside the nurse on duty. Our family would visit often and we ended up spending Christmas there. We made the best of it and bought a small festive tree and opened presents.

We tried about 4 different anti-seizure medications over the course of almost a week. The pediatrician on duty was consulting with a neurologist in Quebec City during this time. Things didn’t get better, if anything they got worse. Félip was having a steady 30 something seizures a day ranging in length.

Change of scenery

The decision was made to transfer us to the “Centre Hospitalier de l’Université Laval” in Quebec City as they had specialists that could look after Félip since his seizures were proving to be quite a challenge to control. The hospital in Quebec was about 3 hours away from the one in Edmundston. The trip was made in ambulance, once again, in case Félip had a prolonged seizure or stopped breathing.

Things were very different in Quebec. We weren’t re-admitted to the ICU there. We had a shared room on the regular pediatric unit, although it mostly remained empty the time we were there. We were labeled as possibly infectious and put in isolation (this is just hospital procedure as we were transferred from out of province). We had very limited living space around Félip’s hospital crib and had a cot to sleep. Our days in Edmundston felt like a distant memory of better times.

Since we weren’t in the ICU anymore and didn’t have a dedicated nurse we were responsible for seizure monitoring. We monitored day and night taking shifts and making sure to keep a close eye on him at all times. The staff often mentioned that we didn’t need to monitor so much but we felt that this was the only way to measure the effectiveness of the treatments.

She was right

We were being seen by many specialists ranging from neurologists to geneticists and all sorts of developmental therapists. Most of the staff especially the pediatricians on duty were changing almost on a daily basis during the first week. This was because we were between Christmas and New Years.

We’ll always remember one of the pediatricians that came for his daily round. We only saw him that one time. He told us that he was going to be very honest with us, looking at Félip’s progression over the last 2 weeks and the tests we had done, the future didn’t look very promising. He said Félip was going to be significantly delayed and disabled. He said there was obviously a genetic cause to the seizures and his other early on challenges. He also said the genetic disorder in question might never be identified as is often the case.

This was the first time someone had been this frank with us. We were very grateful for his honesty. When the doctor left we both took a moment to let the facts sink in. We weren’t that surprised as we were already seeing some of the effects the seizures and treatments were having on Félip. By now Félip had a naso-gastric feeding tube for his feeds to prevent him from choking on his bottle and getting malnourished. He was heavily sedated and had regressed in his global development almost to the point of being newborn. We weren’t surprised, but it still crushed us and made us feel so helpless.

The only way is forward

We quickly established a routine during our time in Quebec. This helped us get through the 3 weeks we were there. Our families would still visit us, spending as much time as they could with Félip.

The staff’s goal in Quebec was always to get Félip stable enough to return to Calgary, which we definitely agreed with. We tried another 4 or 5 different anti-seizure medications often combining them. We also took a stab at common metabolic disorder remedies. Félip’s EEG (brain activity monitoring) and the endless amount of genetic and neurological tests we were doing weren’t giving us any hints. We were basically shooting in the dark. Some treatments even made things worse.

At some point his seizures became less frequent and less intense as well as more predictable, following a distinct daily pattern. We got the green light for travel and were air transported back to Calgary on a medical jet (not just any jet, Barbara Streisand old private jet!).

We were finally going home.

Home sweet home

We often heard that the Alberta Children’s Hospital in Calgary was a world class medical institute with world class staff. Once we arrived at the hospital, we didn’t need further convincing. The hospital was built more recently and they spared no expense. They consulted with parents and children for both the design and accommodations. Every room is private, spacious, and has an on-suite bathroom. They are furnished with a day bed, chair and adjustable table. The first night back from Quebec we slept unbelievably well.

Everyone on staff was very nice and knowledgeable. We’ll never forget meeting the neurologist that was on duty during our first week. He sat down with us with a pen and paper and asked lots of questions to get a baseline for Félip’s seizures. After we were done he started explaining a few things and basically said ”He [Félip] is on way too many medications right now. This is just ridiculous.” . This strong, confident and professional opinion was our first real impression of the hospital’s staff, an opinion that we still have to this day.

Funny enough this neurologist went on to become our out-patient clinical neurologist that currently follows Félip.

Our new routine

Now that we were back home in Calgary our routine changed quite a bit. We would alternate staying at the children’s hospital, sometimes staying a few days at a time. We would spend time together during weekends and times of overlap for shift changes. I [Max] started going to work for half days from Monday to Friday to accommodate our hospital shifts. Robyn would then get time at home when she was off duty to take care of the pets and get some well deserved rest.

Félip was followed by many different specialists while at the hospital. A big focus was placed on assessing his development and looking towards the future. He was a little less sedated at this point which also helped with exercises.

After several weeks, 4 to be precise, the staff started discussing going home. We were very nervous. We had basically been in hospitals for about 2 months now and so many things had happened. Félip was still having many seizures, around 30 to 40 a day at this point. The reality was that he would have to live with them until we found an effective therapy. Trying different therapies could however be done from home through the out-patient clinic. Félip also still had a naso-gastric feeding tube for his feeds. We had to learn about all the equipment involved with his feeds and feeding tube. We also had to learn how to replace the feeding tube every week and what to do if he yanked it out.

We started with a night pass, which is when they just allow us to leave our unit for a night without discharging us. Our room is kept for us for our return the next day. We used night passes like these twice until we felt convinced that we were comfortable being discharged.

Bringing him home is a feeling we’ll never forget. The blissful feeling of not having to be in the hospital anymore and both of us being home. Félip being unhooked from all the equipment and no longer being restricted to the same four walls. It did feel a little weird though. We got back home with Félip and realized that the last time he was here he was doing tummy time, sleeping in his swing and bottle feeding. Things would never quite be the same.

Today

It’s been over a year since we’ve been discharged from the hospital after the original ordeal. So many things have happened since then. We’ll try to cover these within individual blog posts.

Today and over the past year we always strive to live better lives for Félip and ourselves. We try to be optimistic, even if it is very challenging at times. This is an ongoing process and we keep learning and improving every step of the way. We hope Félip will be with us for a long time and our goal is to provide him everything he needs to achieve his full potential.

We hope you’ve enjoyed reading our story.

As always… Love. Laugh. Repeat.